Tag Archives: Neurodiversity

For the past seven years we’ve sent our eldest son off to school every day and hoped for the best. Some mornings, we’ve held our breath and wondered if/when the call from the principal would come. Other times we’ve laughed with tears in our eyes at the things he’s accomplished easily – things that we thought would be hard, or even impossible.

He is ready for middle school, but am I?

We’ve worked with new teachers every year and several new principals, but through it all the Learning Centre in our neighbourhood school has been a place of refuge, understanding, and true partnership.

Today is the last full day of school and I’m overcome with emotion at the thought of saying good-bye to the people who’ve helped my husband and I raise our son from a small boy into a young man. Our Learning Centre teacher has been a constant source of ideas and inspiration, our colleague and co-conspirator, a steady hand in the sometimes stormy seas of elementary school. Our son is ready for middle school because of her.

Like us, the Learning Centre has been there for our son every day. Like us, the teachers in that centre have asked a lot of him. They’ve expected him to try and try again. Like us, they’ve loved him, cheered for him, thrown their hands up in the air at times, and then used those same hands to hug him or cajole him or give him a mighty high five. In short, they’ve helped him begin life’s most important journey – the path to finding himself, his own truth, his own way, outside of our family.

How can I possibly recognize the gift that these teachers and educational program assistants (EPAs) have given to our family? My best friend smiled at me as I tried to find just the right thank you – a gift card just doesn’t seem to capture the enormity of the contribution they’ve made.

Before we even had a diagnosis the Learning Centre was there for helping our son adjust to the routines of school life, giving him a quiet place in the midst of the sensory and social overload. And they were there for us too, as we navigated new terrain.

Once we knew about the Asperger’s, we’d sit around the table during program planning meetings and compare notes. What successes were we seeing? How could we tackle the latest challenge? And always, at some point, we’d end up laughing and sharing the stories that made us smile. That’s the part that always brings tears to my eyes – the moment when a teacher, like a grandparent or cherished aunt, shares the same intimate appreciation of your child’s special gifts; when you marvel at the same small things that are almost invisible to others.

Don’t get me wrong. It hasn’t always been a picnic. We’ve all had our moments along the way. Times of intense worry (on my part) or times where the way forward hasn’t been clear. Or times when we’ve wondered if shrinking resources were going to make life more challenging for everyone.

But at the end of the day, the Learning Centre has been a tiny perfect microcosm of the community that I wish all our children could grow up in, a place that:

truly sees and celebrates the individual, without losing sight of the collective

has caring people who are there to help, but are equally intent on stepping back so kids can stand on their own

doesn’t feel sorry’ for our kids! They embrace their strengths and adapt for their weakneeses

admits there are at least ten ways to do every task (especially if you visit the Dollar Store or use video)

recognizes that a joke is way more effective than a raised voice (I’m still learning this one)

is full of warm hearts and cool heads – a perfect combination when things get rocky

So as I look at pictures of my son’s Grade Six graduation, I know that behind every look of pride and joy and hard-won accomplishment stands the care and support of our Learning Centre staff. I’m not really ready to say good-bye to them, but I’ll never stop saying thank you.

I think what makes the kindness of strangers so powerful is the fact that it’s unexpected. We’re not looking for people we don’t know to go that extra mile for us, the way we hope family and close friends always will. And that’s why those small acts of kindness have the power to sweep us off our feet.

Take for instance, the incredible story forwarded to me this week by a friend at Carleton University. Confronting Asperger’s in the classroom is a lovely gem, wonderfully written, that tells the tale of several Carleton students who have Asperger’s Syndrome and how they, with their professor’s help, are navigating the maze of university life.

I was struck by two things right away: first I was moved by how a bit of extra effort on the professor’s part yielded such incredible dividends on the part of the student. The time he took to understand his student and adapt his style meant the difference between someone just ‘getting by’ or reaching their full potential. I was also struck by the reciprocal nature of his gift – how his kindness enriched him and opened his eyes to Asperger’s students and their particular needs and abilities.

I can imagine when dealing with students how difficult it must be to build relationships and how much easier it is to focus on things like ‘outcomes’ and ‘compliance’ and ‘socially acceptable behaviour.’

Now I See the Moon, by Elaine Hall

I’m reading a book right now called Now I See the Moon. It chronicles the journey of Elaine Hall, an L.A. acting coach for kids who adopts a young boy from Russia and soon finds out he is autistic. Her story is full of wonderful insight, starting with the book’s title, which finds its origins in a Japanese haiku:

Barn’s burnt down –

now

I can see the moon.

That poem just makes me giddy with unexpected delight – how something you assume is awful is actually a hidden gift. Hall devoted years of her own working life to her son’s education and I was struck by her focus on meeting her son ‘where he lived,’ rather than trying to pull him into our neurotypical world. The people working with her son weren’t focused on changing his behaviours at first, they were focused on understanding those behaviours, matching them, and then using the resulting connection to build a relationship with her son. Once that relationship was established trust was able to grow and new doors opened.

When I read the article about the prof at Carleton University I felt the same way. He took the time to listen and learn, and the doors opened wide – not only for him, but for his students too.

On Friday night our parents’ group celebrated a special milestone – the premiere of a new song and music video created to shine a light on Autism Spectrum Disorder (ASD) and tell a slice of our story as parents and families.

The project began as part of the new Atlantic Minds Wide Open film festival, an incredible undertaking that brought together filmmakers, mental health professionals and the community to explore the role that film and filmmakers can play in wellbeing.

Although ASD is not a mental illness, it’s common for kids and adults on the spectrum to experience mental health challenges due to their difficulties with social interaction and communication. The festival was a ready-made opportunity to spread the word – too good for us to pass up.

The video was a big step for our group and the families involved. It’s one thing to share our hopes, dreams, and challenges in our meetings; it’s quite another to stand up in front of our community and do the same.

But this project was clearly meant to be. Every step of the way, doors opened, connections were made, and things just got done.

The first ‘good sign’ was meeting Amy Spurway during a brainstorm session organized by the film festival. Then the idea of doing a music video just ‘came to her’ as she was heading out for our follow-up meeting over coffee. That night, the song ‘Mind Over Matter’ came to her too, as whole and perfect as an egg. I’ve included the lyrics below. I told Amy last night that I often find myself humming the song, sometimes during tough moments, and I find it very comforting. What a gift she has given us.

Then came the good graces of Kimberlee McTaggart – a Gemini-award winning editor and long-time fixture in Nova Scotia’s filmmaking community – and a woman I am fortunate to count among my closest friends. Even though she was in the middle of editing the third season of Call Me Fitz, Kim gave her very precious weekends to editing ‘Mind Over Matter.’ She also called in some favours from two very talented filmmakers: John Hillis and Caley MacLennan, who made our kids feel like movie stars with their attention, praise, and patience.

I also have to single out Dr. Andrew Starzomski, a psychologist at the East Coast Forensic Hospital, who organized the festival. Andrew supported our project from the very beginning, and gave more of his time to arrange, play, and record Amy’s song. One of my favourite shots in the video comes toward the end when Andrew is recording our kids singing; he looks up at the camera with a stunning smile, full of joy. His passion for helping others find their own joy is part of what made this whole process so meaningful.

On Friday night every parent marvelled at the beauty of the video, which captured the essence of our kids with warmth, humour and dignity. We also talked about our kids, who struggle with transitions, waiting, and following instructions, yet who were absolutely in their element on shooting day.

The project brought so many benefits the video itself is almost gravy! Making the signs for the video with our families was a great process. And getting together as a group is always good – I never fail to feel simultaneously lighter and more grounded after our gatherings.

But it was connecting with Andrew, Amy, Kim, John, and Caley, and all the folks who saw our video on Friday that made this matter to me. It’s all about telling our story and making the circle bigger for our kids. Stay tuned: a sequel is sure to follow!

Mind Over Matterby Amy Spurway

Imagine waking up each day with a feeling
no matter what you say or do you don’t belong
The bright light burns,
you can’t take turns,
they don’t get the way you learn
What you though would make you special, makes you wrong.

So it’s mind
Over matter
That’s what it takes for you
to face the world each day
It’s all mind
over matter
Why can’t they see your difference
in a better way.

Imagine waking up each day with a mission
to help your baby find some ground upon this earth
but folks don’t bend
don’t understand
they try to make them just pretend
Not seeing who they are, or what they’re worth.

So it’s mind
Over matter
That’s what it takes for you
to fight that fight each day
It’s all mind
over matter
Why can’t they see your strength
in another way

Imagine knowing that you could make a difference
you could help somebody spread their wings and fly
Give a little grace
and a little space
know a heart’s not lost or out of place
Just because someone can’t look you in the eye.

And it’s mind
Over matter
That’s all it takes for you
to change the world today
It’s just mind
over matter
Why not see our spirits
in a whole new way.

We can see our beauty in a whole new way.
We can change the world.
We can start today.

I cannot wait to read John Elder Robison’s next book, Be Different, which promises to be a fascinating window on the inner life of Aspergians. Check out this web interview for a great overview of what he covers in his book.

Elder says: “Over the past three years, people have asked me countless questions about my thought processes. This book interprets those thoughts while at the same time benefiting from the improved power of reflection that the process itself has given me.”

I’ll write a review before too long. Or if you read it before me, please let me know what you think.

The film is called Mary & Max and features the voices of some of my favourite actors including Toni Collette and Philip Seymour Hoffman.

But before you go and buy a ticket – which I was just about to do – the film is really for older kids (12 and up). I checked out CommonSense Media to find out some of the themes/issues in the film and you may want to check that out before going. They give a great synopsis (major spoiler alert). I’m definitely going to see it, but Ryan will stay at home.

The event is part of the festival’s Family Day on Saturday, April 16 and takes place from 1 p.m. to 4 p.m. at Empire Theatres Dartmouth Crossing. At 4 p.m. the ‘Friends, Enemies and Asperger’s Syndrome Panel’ begins – also for ages 12 and over.

If you take your child, or if you and/or your child have seen Mary & Max I would love to hear your thoughts on the film.

We belong to a relatively new network of parents, all of whom have kids with Asperger’s or similar challenges, and I was just recently saying how the playground can feel like the 7th ring of hell as I watch our beloved boy doing some very confusing (read: Aspergian things).

The parents talked about the balance between obligation I feel to be educating others about Asperger’s and Ryan’s right to privacy. At this stage, I’m erring on the side of education, because from what I’ve heard from other parents, eventually kids can clam up about their diagnosis as fitting in becomes more and more important to them.

There are lots of great resources out there to explain Asperger’s to family and friends. The OASIS website is a treasure trove of info from a basic “What is Asperger’s fact sheet” to a letter for grandparents (that is a little too long, but filled with good info).

When we first researched Asperger’s what we read didn’t sound like Ryan at all. It was all too vague or too clinical. Here’s what we’ve learned about Asperger’s so far (and we welcome corrections, additions and general comments!):

1. It’s about the brain, not about behaviour. As we tell Ryan ‘Your brain is wired differently. It makes some things easier (like reading) and some things harder (like managing ‘big’ feelings). AS kids see the world through a different lens and we have to constantly remind ourselves of that.

2. Not every Aspergian is obsessed with cars or trains. Yes, kids with AS tend to have special interests, but Ryan’s interests actually change regularly, with the exception of reading, which is constant. What is distinctive about AS kids is that their special interests tend to be all encompassing, so they will often lecture others about their passions with little regard for the reciprocal nature of conversations. Their voices may also sound wooden or flat.

3. Little professor syndrome: “Daddy, do you hold me in lower esteem than my brother?” Ryan’s highly advanced use of language is extremely entertaining (and occasionally embarassing) and is somewhat typical of AS kids.

4. Completely misses the hidden curriculum. This is where things start to get difficult for the kid with AS . While they might be able to read and even respond to questions, they often ‘don’t get’ the unwritten rules that are part of everyday functioning in our ‘neurotypical’ world:

appropriate and inappropriate language (you can talk about poo with your friends but not the principal)

In short, AS kids really ‘don’t get it’ because their brains function completely differently than ours. I’ve heard of a number of AS young people and adults who take acting classes to ‘learn’ how to respond to particular situations.

5. Difficulty understanding the emotions of others. AS kids often have a neurological roadblock that keeps them from understanding or predicting the behaviour of others. They sometimes can’t see the connection between their actions and how they impact others and they can have difficulty seperating fact from fiction (Ryan lost something at school this week and immediately assumed someone stole it from him, even though he had lost it.)

6. Accessing information from one situation and applying it to another. Most kids learn something a few times and then can access that experience and apply it to different situations. An AS mind is a busy and confusing place, so although kids may be able to recite the correct response to a difficult situation, they can’t necessarily access that knowledge when they need it.

7. Visual trumps verbal. Although Ryan’s verbal skills were very advanced at a young age, his ability to process verbal requests is quite limited. Written instruction works best because of his highly visual mind. I really liked the way the HBO movie about Temple Grandin illustrated this phenomenon. This is a real challenge for me as a parent, since I’m a big talker and all that does is add noise and confusion to any situation.

8. Sound, smell and sight sensitivities. Someone once described an Aspergian brain as a blackboard covered with hundreds of similar yellow sticky notes. They all look the same and are overwhelming because no one note stands out. That’s the sensory overload experienced by some AS kids – the white noise at the pool can be overwhelming, or a seemingly mild smell like cucumber, even the hum of the fluorescent lights at school can be difficult.

9. Social interaction can be hard. Impaired socialization is a hallmark of Autism Spectrum Disorders, so although an AS kid may want to interact (and many do!) they don’t know how to enter a conversation or ask to join a group of kids.

The last thing I should say is that the Autism Spectrum is incredibly broad, so some of the issues above won’t affect all kids with AS. Each kid is different. That was one of the challenges with diagnosing Ryan originally – he didn’t fit the mold in some ways, but he did in others.

What would you tell others about Asperger’s? What resources have you used to explain it to friends and family members?

Links

By Louise KinrossKrista Keilty is a nurse practitioner and visiting scholar at the Bloorview Research Institute who studies parents who care for children who require a “mini-ICU” at home. These children have complex medical problems, use ventilators, and require round-the-clock observation. Krista has cared for these children and families as a nurse at SickK […]

By Louise KinrossAzadeh Kushki (centre) is a scientist at Holland Bloorview who analyzes patterns in children’s brain and behaviour data to guide treatments for autism. She also develops technologies that make life easier for kids with autism, like this Google Glass software that coaches kids through social interactions. Azadeh, who trained as an electrical […]

By Louise KinrossGoodness, we haven't done this for a long time. Below are some recent stories related to disability, parenting and health.But first, many of you follow Meriah at With A Little Moxie. Meriah writes about parenting three kids, including one with Down syndrome, from her perspective as a mom who is deaf and lives with her family off the gri […]

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